I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.
I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.
Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:
An average of 8.5 hours sleep? First time ever in my life!
38 mins awake, on average, when it used to be 2 hours!
A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)
Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).
If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).
She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)
Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).
That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.
My beautiful niece sent me this card. 🙂
Rag and Bone Shop of the Heart 
I think ..I’m not 100% sure.but i think immunologists go hand-in-hand with allergy doctors. I saw an allergy/immunologist and it was very enlightening how much she knew about Cfs/ME… but in the end.. the only answers she had for me were allergy testing, which was good because i found out i am allergic to a LOT of foods. I had to go off all medications for about 5 days and got NO SLEEP for 5 days because I felt so awful and in pain that I couldn’t sleep. It was worth it to find out my allergies, so i can stay away from foods I am allergic to: SOY, Whole Wheat, Pineapple, Raspberry,Pear Squash, Lettuce, tomato, Green Beans, Green peppers, Almonds, Pecans, Trout, and Turkey.! That was good info to have since i ate Turkey, lettuce, tomato, green beans ALL the time! I thought I would feel so much better by not eating these things, I don’t notice any difference, except a little bit less intestinal issues. I also found out I’m allergic to a lot of trees, grass, tobacco, and moderate cat allergy (I have 2 cats..oh well I’m not giving them away because when I didn’t have cats, I didn’t feel any better! so I’m not giving up my pets!) The solution to the allergies was allergy shots once a week, and stay away from foods I’m allergic to. Well, My system is SO SENSITIVE that I had reactions to the allergy shots, even though they started me on a very weak dose. I felt HORRIBLE !!! It would take weeks to recover from 1 little shot. By the next week when it was time for another shot I still hadn’t recovered from the first one. I tried ..I really tried.. but they made me sicker! Then for the first time ever, I woke up broken out in HIVES all over my body, severe hives that spread so fast I went to the ER for fear of throat closing up as it had reached my face and ears within minutes. ER gave me 2 chewable pepcid. ( I thought PEPCID? huh? I figured I was going to be getting some type of epi-pen type of shot or steroid shot) But 2 pepcid and about 20 minutes later and the hives slowly started being less itchy, less inflamed, and started to fade to big light pink splotches rather than welts. So, I thought it was from the allergy testing and allergy shots, so I stopped getting them after 3 rounds of hives and about 6 attempts at allergy shots within a year’s time. Then I woke up with hives for no reason and have continued with the hive problem off and on since then, but, I went back to the Allergy/Immunologist and was told these hives aren’t from allergies, this is from the mono. I had been diagnosed with chronic mono that same year, 4 months after starting the allergy testing. So I still get hives, and it’s still blamed on chronic mono…as my EBV tests are still positive for reactivated virus…still.. after 2 years! So I have to keep pepcid on hand all the time because I never know when the hives will come. My friend went with me the same day and got allergy testing too, she also has Fibro and CFS. She didn’t have any problems with it. Even though her results were several allergies as well. I must be extra sensitive. But the doc sent her for blood testing, and she didn’t send me for any at all, however i brought copies of my labs to her from my pcp, so maybe she had all the info she needed from that. Good luck, and I’m interested to hear how that immunology appointment goes.
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Wow! You’re so brave to have gone off all of your supplements.
MCAS has been on mind too lately. It could potentially explain my throat issues and lymph node issues where POTS cannot. I also notice with my new treatment, each symptom classic of POTS has improved while symptoms such as the lymph nodes, throat pain, and fever haven’t. I came across this slideshow from one of the world experts on MCAS http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf It’s very long but very informative and you can get the gist just by flipping through. Interestingly, tryptase tests (which are commonly used) can miss MCAS. I forget what it said to test, but it is in the slideshow.
When I did reintroduction, the easiest thing for me to do to identify if a food bothered me was bloating. I sometimes was a huge nerd and measured my stomach after eating a food, a few hours after, before bed, and in the morning and compared it to the baseline levels I had taken. I’m not sure if bloating was an issue for you or not. I didn’t think some of the foods I had eliminated made me bloat until I reintroduced them. It is just I was eating so many foods I was intolerant to, I didn’t notice minor bloating.
You diet sounds frustrating, but it sounds like your husband is supportive and you have a good attitude about it. My fiance is always reading labels to try and find pre-made foods I can eat. It’s so sweet — we’re lucky. Since your Mom is coming, maybe you could look up how to make your own nut or coconut milks using only ingredients you can use and she could test out recipes to see what you like. She could make you a bunch and you could freeze it. 🙂
I went and saw an immunologist early in my journey. She was very helpful and never thought I was crazy. She’s the one who finally realized what was going on with my heart rate and thought to have that checked out which lead to my POTS diagnosis. She ran all sorts of tests for diseases I hear about frequently on both CFS and POTS message boards as “they never thought to check for _____”. Hopefully you’d be just as lucky and get an open minded doctor who could check you out.
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Hi
Have you thought about moulds? Perhaps that is an allergy that you suffer from. You said the humidity in your room was 75. Mould grows in any room over 65. I have a lot of your symptoms when I’m terribly mould exposed, and I’ve been diagnosed with chemical sensitivities and fibromyalgia. The fibro goes away when I take better care of myself. I too, have found the almond milk to help, and yes, it’s so hard finding one with no sugar or additives. POTs sounds very tricky. Is there a cure?
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I never stop thinking about molds! haha. My husband assures me that our house has no mold (he’s been inside the walls and everywhere), but I’m still paranoid. I have a big dehumidifier which I use to try to get the humidity down to about 45% The 75% was just for a few days and I was combating it with the dehumidifier regularly.
I grew up in Ireland in a damp house and I had asthma and lung issues, so I’m convinced I am sensitised to mold. I just don’t want to pay the money for an inspection or, god forbid, remediation. I have no income right now, so it’s not an option.
No cure, unfortunately, there never is to our problems!
PS: thanks for the comment, I do read your blog, but I’m not sure I’ve been getting emails, so I just resubscribed. 🙂
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Thank you for subscribing. I was missing for a while there, so that may be why. I’m thinking about getting a dehumidifier because I need to avoid that at all costs. it’s taken 10 years to work out but if I avoid mould then I can cope better with everything else.
I never forked out the money for an inspection but after not being in the house I could smell it when I went back in. Fresh air and air filters are what work for me.
No cure, bummer! ME keeps popping up on my radar. I’ll created a link to your blog later. You’ve got great content that could help others in your position.
Cheers
Miche
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What’s wrong with the gums – xanthum and guar? Did your doctor give reason as to why you should avoid them? I know exactly what you mean about it being so hard to pin point the cause of symptoms, they seem to come out of nowhere no matter what we do! Bloating and constipation are my go to clues when I’ve had a food my body can’t tolerate but I’m less good at picking up on cause and effect for wider body ME/CFS symptoms. It’s so hard! Good luck with the reintroductions, I look forward to hearing how you get on with them.
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My doc didn’t expound on her reasoning for the gums. She seemed much more concerned with xanthan gum than guar gum. She said she was concerned about neurotoxins (I think??) in carageenan.
I have to remember to look out for bloating and constipation. I think of those as regular life-long conditions, not as reactions to something! Trying dairy today after a year without it. Milk in my tea! Cheese! 🙂
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I know well the struggles of trying to live on a diet with conflicting restrictions. Much sympathy to you.
Xanthan gum is one of the things my gut reacts horribly to. I ended up getting so much worse when I tried to cut out gluten partly because I was substituting gluten-free products made with xanthan gum. Ugh. May not be a problem for you, though. Lots of people tolerate it fine. I don’t want to give you anything extra to worry about, but for the sake of sharing info, I recall hearing about it being used as a thickening agent (SimplyThick, I think?) and causing some fatalities in infants. I sort of figure anything that will kill an infant probably doesn’t do great things to me either. I’m such a canary in a coal mine when it comes to stuff like that.
Yay for re-introductions. There seems to be a lot of uncertainty about the food allergy blood tests and whether or not they actually mean anything, but I actually found they lined up really closely with what I found through my responses to eating various foods. I’ve reintroduced some of those foods anyway, though. My body clearly wants something in them really badly, so arguing with it has its own down sides.
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I have a soymilk for you, if it turns out you can add that item back in: Westsoy Organic Unsweetened. Ingredients are soybeans and water. I switched to it earlier this summer as a carrageenan-avoidance strategy after having been using Silk almost continuously since it came out in 1996. I am not sure whether dropping carrageenan has helped or not.
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